STEP 6: Managing recurrent or residual disease

Patients who present with recurrent or residual disease should be managed by a multidisciplinary team and offered timely referral to appropriate physical, practical and emotional support.

Step 6 is concerned with managing recurrent or residual disease. The likelihood of recurrence depends on many factors usually related to the type of cancer, the stage of cancer at presentation and the effectiveness of treatment. Some cancers cannot be eradicated even with the best initial treatment. But controlling disease and disease-related symptoms is often possible, depending on the clinical situation.

Some patients may present with symptoms of recurrent or residual disease after a previous cancer diagnosis. Access to the best available therapies, including clinical trials, as well as treatment overseen by a multidisciplinary team, are crucial to achieving the best outcomes for anyone with recurrent or residual disease.

Signs and symptoms will depend on the type of cancer initially diagnosed and the location of disease. Most cases of recurrent Hodgkin or DLBCL are identified through routine follow-up or by the patient presenting with symptoms, or with abnormal ‘non-specific’ laboratory tests such as serum LDH. Symptoms can often present as described in section 2.1.

When there is clinical suspicion of recurrence:

  • Comparing current PET-CT or CT scans to previous images can help to confirm recurrence. If recurrence is detected, tissue biopsy and restaging may be necessary.
  • Bone marrow biopsy may be necessary if aggressive treatment is being considered.
  • LDH levels and other testing may be used to determine prognostic factors.

Managing recurrent or residual disease is complex and should therefore involve all the appropriate specialties in a multidisciplinary team including palliative care where appropriate. Some instances of recurrent or residual disease remain potentially curable with intensive therapies, and clear documentation of the patient’s wishes of the goals of treatment are a fundamental element of this phase of treatment planning. From the time of diagnosis, the team should offer patients appropriate psychosocial care, supportive care, advance care planning and symptom-related interventions as part of their routine care. The approach should be personalised to meet the patient’s individual needs, values and preferences. The full complement of supportive care measures as described throughout the optimal care pathway and in Appendices Aand B, and in the special population groups section should be offered to assist patients and their families and carers to cope. These measures should be updated as the patient’s circumstances change.

Survivorship care should be considered and offered at an early stage. Many people live with advanced cancer for many months or years. As survival is improving in many patients, survivorship issues should be considered as part of routine care. Health professionals should therefore be ready to change and adapt treatment strategies according to disease status, prior treatment tolerance and toxicities and the patient’s quality of life, in addition to the patient’s priorities and life plans and end-of-life plans.

If there is an indication that a patient’s cancer has returned, care should be provided under the guidance of a treating specialist. Each patient should be evaluated to determine if referral to the original multidisciplinary team is necessary. Often referral back to the original multidisciplinary team will not be necessary unless there are obvious aspects of care involving different therapeutic and supportive care disciplines not otherwise accessible. The multidisciplinary team may include new members such as palliative care specialists.

Treatment will depend on the location, extent of recurrent or residual disease, previous management and the patient’s preferences.

In managing people with Hodgkin lymphoma and DLBCL, treatment may include these options:

  • conventional-dose salvage chemotherapy
  • high-dose chemotherapy with autologous stem cell transplantation
  • palliative chemotherapy
  • allogeneic stem cell transplantation (see section 6.4.1)
  • radiation therapy
  • immunological or targeted therapies
  • CAR-T therapy (chimeric antigen receptor therapy [engineered immune cells]).

Some of these treatments are not available at all treatment centres and referral to specialised centres may be appropriate.

The potential goals of treatment should be discussed, respecting the patient’s cultural values. Wherever possible, written information should be provided.

Encourage early referral to clinical trials or accepting an invitation to participate in research.

Combination chemotherapy regimens with autologous stem cell transplantation is considered in first relapse. In subsequent relapses or where autologous stem cell transplantation is not appropriate, clinical trials should be considered. Novel biologic agents may be indicated, in the case of Hodgkin lymphoma.

Currently, stem cell transplantation can only take place in tertiary public hospitals with appropriate expertise and facilities (Australian Government Medical Services Advisory Committee 2019).

Health service characteristics

To provide safe and quality care for patients having stem cell transplants, health services should have these features, in addition to the health services characteristics listed in section 4.2.1:

  • dedicated standard isolation rooms (single rooms with ensuite and clinical handwashing facilities)
  • access to a cell separator for collecting peripheral blood progenitor cells, with appropriately trained nursing staff available for the operation of cell separators.

Advance care planning is important for all patients with a cancer diagnosis but especially those with advanced or relapsed disease. Patients should be encouraged to think and talk about their healthcare values and preferences with family or carers, appoint a substitute decision-maker and consider developing an advance care directive to convey their preferences for future health care in the event they become unable to communicate their wishes (AHMAC 2011).

More information

Refer to section 4.3 ‘More information’ for links to resources.

Refer patients and carers to Advance Care Planning Australia or to the Advance Care Planning National Phone Advisory Service on 1300 208 582.

Early referral to palliative care can improve the quality of life for people with cancer and in some cases may be associated with survival benefits (Haines 2011; Temel et al. 2010; Zimmermann et al. 2014). The treatment team should emphasise the value of palliative care in improving symptom management and quality of life to patients and their carers. Refer to section 4.3 for more detailed information.

The lead clinician should ensure timely and appropriate referral to palliative care services. Referral to palliative care services should be based on the patient’s need and potential for benefit, not prognosis.

More information


Refer to the end of section 4.3 ‘Palliative care’ for links to resources.

The treatment team should support the patient to participate in research and clinical trials where available and appropriate.

For more information visit the Cancer Australia website.

See validated screening tools mentioned in Principle 4 ‘Supportive care’.

A number of specific challenges and needs may arise at this time for patients:

  • physical, nutritional, fitness, wellbeing and immunological issues – these can arise due to lymphoma or DLBCL, or from treatment or both; some of these issues can be life-threatening and can affect quality of life (referral to an appropriate clinician may be required)
  • emotional and psychological distress resulting from fear of death or dying, existential concerns, anticipatory grief, communicating wishes to loved ones, interpersonal problems and sexuality concerns
  • potential isolation from normal support networks, particularly for rural patients who are staying away from home for treatment
  • cognitive changes as a result of treatment and disease progression such as altered memory, attention and concentration (a patient may appoint someone to make medical, financial and legal decisions on their behalf – a substitute decision-maker – before and in case they experience cognitive decline)
  • decline in mobility or functional status as a result of recurrent disease and treatments (referral to physiotherapy or occupational therapy may be required)
  • coping with hair loss and changes in physical appearance (refer to the Look Good, Feel Better program– see ’Resource List’)
  • appointing a substitute decision-maker and completing an advance care directive
  • financial issues as a result of disease recurrence such as gaining early access to superannuation and insurance
  • legal issues (completing a will, care of dependent children) and making an insurance, superannuation or social security claim on the basis of terminal illness or permanent disability.

Rehabilitation may be required at any point of the pathway, from preparing for treatment through to palliative care. Issues that may need to be dealt with include managing cancer-related fatigue, improving physical endurance, achieving independence in daily tasks, returning to work and ongoing adjustment to cancer and its sequels.

Exercise is a safe and effective intervention that improves the physical and emotional health and wellbeing of cancer patients. Exercise should be embedded as part of standard practice in cancer care and be viewed as an adjunct therapy that helps counteract the adverse effects of cancer and its treatment.

The lead clinician should ensure there is adequate discussion with patients and carers about the diagnosis and recommended treatment, including treatment intent and possible outcomes, likely adverse effects and the supportive care options available.

More information

Refer to Principle 6 ‘Communication’ for communication skills training programs and resources.